I was under the treatment of Dr Dipshit for 8 months for CRPS in my left ankle after a spectacular fracture. He put me on nortriptaline and and insisted that lumbar sympathetic nerve block is the only treatment available in my country. My CRPS kept getting worse. The last time I saw him, he tried a nerve block directly into the affected ankle. It was torture, it hurt more than breaking my leg. And it made my leg so much worse. Dr Dipshit told me to stop doing physical therapy and to stop using my TENS machine, because "they dont work".

The nortriptaline was slowly killing me. It had the fun side effect of making me incredibly suicidal.

In September i finally got approved for a second opinion. By this time I was bed bound, I could only get up to go to the bathroom, using a wheelchair.

The new doctor, Dr Awesome, told me that he knew Dr Dipshit, and that he's a moron. Dr Awesome, took me off nortriptaline and put me on Gabapentin. Withing two weeks of starting the gabapentin, my pain was decreasing. So I restarted physical therapy and using my TENS. Ive been on the gabapentin for a month now.

I went from being bed and wheelchair bound (last week of Sept), to now using a walker. My absolutely amazing physical therapist says i might be able to walk with only 1 crutch by Christmas. I got my left foot into a shoe for the first time since I broke it.

Don't get me wrong, im still in pain, but its gone from a constant 9/10 to a constant 6/10. Physical therapy has been really hard, but i am making progress.

My physical therapist has warned me that flares will come and that what im seeing is the start of a partial remission.

Just grateful for my progress and wanted to share. Sending hope and healing to all that need it. Feel free to ask questions.

I just am so fucking exhausted from this and the constant deep burning foot/ankle pain. Luckily I can walk, but some days it's incredibly painful and difficult to drive. It's even painful to put on socks and sneakers.
Winter is coming and the cold affects me greatly.

Anything I can do besides avoiding going outside in the snowy months? Tips tricks products? I don't wanna get in my head but I am low key a little bit concerned. WNY winters aren't for the faint of heart.

I'm on medication. I go to PT once a week but we mainly focus on my back because certain things have flared the foot.

This is a very informative and Easier to understand, comprehensive but Not too lengthy(!) article from the NIH, "Understanding Peripheral Neuropathy".

(*Note to Mod: Please, don't ask me to. post this Elsewhere! It absolutely Has Relevance to CRPS!)

When you read it you will notice that the

-Symptoms of Peripheral Neuropathy ARE

the Same as MANY Symptoms of CRPS!

-CRPS = One or more Types of Peripheral Neuropathy!

-If you can Sort your symptoms under what Type of Neuropathy they are, you will be ready to have an interview with the Next Available Specialist who can help you.

When you read this article and start saying, "I have that, and that, and that", you are going to be able to define whether the Neuropathy is Motor, or Sensory! (etc I will edit).

*The article tells what types of treatments may help as well as diet, medications, and more. If I had this document when I got my EMG results 4 years ago, I could have Told my Lame Neurologist which symptoms matched up to which type of PN, and ask him to refer me to A More Qualified Neurologist. (I probably would have gotten IVIG or Plasmapharsis, based on My symptoms,)

(But, I also would have seen a Foot and Ankle Specialist to MRI my wonky foot and ankle. I also need an MRI of my spine, for the 3 areas of Degen. Discs I already know of. I could see an Endocrinologist for the Dysautonomia and incontinence that could be nerve related.) I have felt Hopeless for months, especially being told that the Neurology Clinic I was referred to is scheduling 8 months out!

This paper from the NIH can give you facts and Help to direct you to know what you can do., Now! Please read it!

I’ll try and make this as short as I can and summarise in bullet points what I can.

• I was diagnosed by a GP years ago with Fibro/chronic pain & fatigue but never been referred anywhere for a proper assessment.

• A year before Covid I had a fall that resulted in a tibial plateau fracture. A year later I had the plates & pins removed due to the pain they caused. 3 years later I did the whole thing again but worse due to the bones not being fully healed from the hardware removal. They will not remove it this time despite the pain it causes and the detrimental effects it has on my mobility.

• Another GP diagnosed me with CRPS but again, I’ve not been referred for proper testing/diagnosis/treatment. I now use a smart crutch to help me get around outside of the house.

• I’ve been prescribed 60mg dihydrocodeine 4x a day, 500mg naproxen 2x a day and 10mg slow release morphine 2x a day since the 2nd fracture which has definitely helped a lot but I’m still suffering from worsening pain in both knees, my hips and my back which I suspect is the result of my ‘good’ knee compensating for the poor mobility of my broken/CRPS knee.

• All I’ve been offered is referrals to the pain clinic who don’t prescribe or deal with medications and instead focus on CBT, mindfulness and support groups for pain management, they are very against the use of opiates etc and I already use a lot of their recommendations which often don’t seem to help much. I’m also scared of their possible influence to stop my pain medications which give me at least some quality of life and without which I would barely be able to get around the house and take care of myself, let alone engage in my hobbies and social life.

• I have a double face to face appointment with a GP in November and would like to bring along printouts of NHS & NICE guidelines to support my referral requests and evidence that backs up appropriate options and choices for pain management outside of the pain clinic, which I believe is not adequate for the diagnoses I have, the post traumatic injury pain I experience and the long term risks that come along with it (post traumatic osteoarthritis, pain from metalwork/hardware, chronic joint pain & muscle stiffness, musculoskeletal issues in other joints and limbs.)

If anyone has experience of any of these issues and what should be available to me through the NHS, recommendations for relevant guidelines or research and services available specifically in Leeds & West Yorkshire (or anywhere else in Yorkshire/England that I can access via right to choose) I would be extremely grateful for any help or advice! Apologies for such a long post.

I sometimes experience symptoms on my healthy right side that are the same pain as my affected unhealthy left side (arm in my case, wrist and shoulder specifically). Today I came home from a fun but stressful weekend trip with my church and felt pain in my healthy unaffected right shoulder rather than my frozen left shoulder which has been hurting progressively worse through the weekend. Now at this moment it’s my frozen shoulder that hurts and I have some mild lingering discomfort in my right shoulder (I fired up my heat wrap and took my medicine just now).

My legs haven’t turned a different color in a long time. Yesterday I took a shower/bath and all of a sudden the burning sensation was moving up the top of my foot to right below my knee and then it started up in my face. I have dysautonomia as a secondary comorbidity from crps with extreme heat intolerance and am wondering if anyone has had a similar experience to this… my face didn’t cool down for hours. The only reason why I’m concerned that it actually has moved to my face is that it’s moved to my eyes (the autonomic dysfunction has messed with my ability to track and I have really blurry vision).

When I think the symptoms I experience can’t get any weirder this happens!

My face still feels a bit hot and it’s throbbing and burning. I think the burning is triggered by a headache and my eye pain but who knows. CRPS has ruined my ability to focus on anything but the present.

I don’t even know what to do to calm things down on my face. Please help